For the Love of Henry

TURLOCK -- Henry Johnson loves to strum his guitar. When he has fresh batteries, the 5-year-old Turlock boy makes joyful noises on his electronic keyboard. And he does a nifty Ringo Starr impression, too.

"We got him a little drum kit, which we keep out in the garage," said T.J. Johnson, Henry's father. "I'm getting ready to leave for work at 20 minutes to 6 (on Friday morning), and he's already out there banging away and having the time of his life."

Yes, Henry possesses some very active fingers -- now. That wasn't the case when he came into the world in June 2002.

Afflicted with Apert syndrome, his fingers were fused together when he was born. His hands looked like mittens. Same with his feet. His skull already had hardened and his head was "huge," said mom Rachel, who experienced an excruciating natural birth.

Never miss a local story.

Sign up today for unlimited digital access to our website, apps, the digital newspaper and more.

Apert syndrome turns up in one of about 160,000 to 200,000 babies, according to the Children's Craniofacial Association.

Shortly after he was born at Modesto's Memorial Medical Center, Henry's parents knew he would be destined for surgery after surgery to ultimately repair or at least revise his drastic and physically limiting imperfections.

He's had six major surgeries and numerous other medical procedures so far, with several more to go. Perhaps through the naiveté of his youth, he keeps bouncing back undeterred.

"That kid is resilient," said his dad, who manages a Foster Farms turkey processing plant in Turlock. "For a little peek into his character, two times in his young life he's had casts on both his hands and feet at the same time. In our old house, we had stairs and he'd try climbing them. Here he was, trying to get up those stairs, with the casts, and sweating. Talk about adapting. But that's all he can do, is to adapt."

Henry, at 5, has the cognitive skills of a 3-year-old, his mom said. He attends special education kindergarten at Brown Elementary School in Turlock. He talks when he wants to, but hears and understands everything, Rachel said.

"Want to keep a secret? Don't tell Henry," she said.

Rachel's first experience at motherhood went perfectly when she gave birth to daughter Lauryn in 1998. She expected the same when Henry came along June 15, 2002.

Her water broke at 5 a.m. They went to the hospital, and the anesthesiologist suggested that, because it was her second child, she probably would deliver rather quickly.

Henry had other ideas, putting his mom through 16 painful hours before arriving at 9:01 p.m., and weighing nearly 11 pounds.

When her physician asked if she had been on any kind of medications during her pregnancy, she knew something was, indeed, wrong. Then she saw her baby son.

"I could see his fingers and toes were stuck together," Rachel said. "His head was huge. He was laboring to breathe. I thought, 'OK, it's a weird exception.' I was in shock (from the long labor)."

The physician couldn't explain Henry's condition.

"Nobody had a diagnosis," Rachel said. "Nobody said, 'I've seen this before and it's whatever.' "

A physician from Stanford happened to be on call the following day at Memorial.

"He swings open the door and says, 'It's Apert syndrome. We see that all the time at Stanford,' " Rachel said.

When they brought Henry home four days later, the Johnsons immersed themselves in learning about Apert and where to find the specialized care Henry would need. He'd need surgeries to rebuild his face and head. Surgeries to separate his fingers and make them functional. Surgeries to lift a droopy eyelid. Surgeries with lengthy and painful recoveries.

They began at Stanford, where one specialist wanted to operate earlier than what the Johnsons understood to be the norm.

"Usually, head reconstruction comes at nine to 12 months," Rachel said. "They wanted to do it at three months. I questioned it."

They went to University of California at San Francisco Medical Center for a second opinion, and a surgeon there determined he would wait until Henry was at least 9 months old, confirming what Rachel believed was best for her son.

In essence, that gave Rachel the confidence to make the decisions instead of letting the doctors dictate the terms of Henry's care.

"My wife's amazing," T.J. said. "That's who she is. She wasn't going to take that as a final final."

Nor was she going to accept anyone telling her that Henry shouldn't have the right to look as normal as possible. She knew that his self-esteem will someday become an issue. She isn't bothered by the honesty of young children who wonder what is wrong with Henry.

"I just tell them, 'He's different from you. But isn't he cute?' " Rachel said.

Adults, however, elicit a different emotion.

One day, while waiting in line at the Department of Motor Vehicles in Turlock, she noticed a young woman -- a college student, perhaps -- staring at Henry. Then she heard the click! of a cell phone camera.

"She took his picture," Johnson said. "I got so choked up. Was it going to be a joke e-mail that she sends out to all her friends?"

So she knew she'd do whatever it took to give him the same physical normalcy other children enjoy, and has refused to let anyone sell him short.

Henry had his first head reconstruction operation -- called a cranial vault reconstruction -- done at UCSF. He had to wear a head clamp that mom and dad had to tighten periodically.

"I cried the days we had to adjust his head frame," Rachel said.

That particular surgeon performed only head surgeries -- not the fingers and toes. So it was back to Stanford, where a doctor there said she could separate the pinkie and index fingers on Henry's hands, but wanted to leave his middle and fourth fingers together. Separating those fingers wasn't viable, Rachel said she was told, because there wouldn't be enough blood flow to support the fingers individually. The lack of circulation might cause one or both to need to be amputated later.

"She said it was too complex," Rachel said. "She said, 'Look at Mickey Mouse. He has three fingers and a thumb. Nobody will ever notice.' And I said, 'A third-grader will notice.' She left the room and I started bawling my eyes out."

Another doctor told her they would "do what we can with what God gave him," Rachel Johnson said.

Henry was a year old when he had surgery at UCSF to free the pinky fingers on both hands.

They set a surgery date for Dec. 10, 2003, also at UCSF, to free the index fingers. And separating Henry's toes?

"Nobody in California wanted to do the feet," he said. "They felt it was unnecessary."

Again, Rachel wouldn't accept that kind of thinking. She kept looking for a doctor who would do what she wanted. Surfing Apert.org, she learned of Dr. Jeff Fearon in Dallas. She called him and sent X-rays.

He specializes not only in the cranial surgeries, but also in the other elements of Apert syndrome. Sure, he told the Johnsons, he'd do Henry's head, hands, feet -- the works. They canceled Henry's UCSF surgery date and boarded a plane for Dallas, taking Henry to be operated on by a surgeon they'd never met.

Fearon freed both of Henry's index fingers and two of his toes in December 2003, and separated the rest the following spring.

While in Dallas, the Johnsons met representatives from the Children's Craniofacial Association. People from the group brought Henry a teddy bear and blanket. They sat by his side in his hospital room, giving the Johnsons the chance to grab a bite to eat. They brought educational materials, and they offered to help pay for flights, if necessary, for families who came in from out of state.

The Johnsons, who have good insurance, haven't needed the financial help. But they recognized that other families do. So Rachel Johnson has organized Henry's March, a walk/run scheduled for March 15 at California State University, Stanislaus. She's got a MySpace Web page (www.myspace.com/henrysmarch) and is looking for sponsors for prizes and awards. All proceeds will go to the CCA, to help pay travel and other expenses for families in need. None of it will go to Henry or his family, Rachel emphasized.

"Henry will be the host, not the beneficiary," she said.

His fingers now are separate and functional. Fearon probably will operate again to give them the proper curve and more dexterity, Rachel said. Two of Henry's toes are trying to grow back together and will require more surgery. And his most extensive surgery likely will happen later this year, when Fearon literally removes Henry's face to build up the bone structure and eliminate his breathing problems, and then puts him back together again.

In the meantime, Henry is a rambunctious child who bounces around the house with a typical 5-year-old's energy. He loves to drive his toy Jeep around his back yard. He's a happy little boy who seems to have forgotten the pain he's already endured in his young life, comforted by his loving and protective big sister, Lauryn, who will turn 10 in March.

"He really is a great kid," T.J. said. "He's curious, industrious and very playful. You should see him around babies and other small children. He's so doting. He's just quite a character."

And don't be misled by the crooked little fingers on his small hands.

"He uses those fingers that don't bend and he picks up anything," his dad said. "Never assume he can't pick up anything and everything."

Including a four-count drumbeat or a three-chord progression.

Jeff Jardine's column appears Sundays, Tuesdays and Thursdays in Local News. He can be reached at jjardine@modbee.com or 578-2383.